How things turned out for me - no more EM

Hi everyone,

My name is Brenda. My sister Nicole wrote on this forum several times last year, after I suddenly got severely ill and it turned out I had Erythromelalgia. You were all very supportive in answering our questions and helping out!

Now, exactly one year ago, I can say that I no longer suffer from EM. I want to tell you here what happened. I will start from the moment the doctors started doing several tests on me. For my story up to this point, please see my previous threads.

After my time in hospital, when I finally could go home and was doing better, they called me up for an EMG (electromyography) test. This is a test with a machine that is attached to various parts of the body, in my case to my hand, wrist, elbow, shoulder, foot, ankle and knee, to review activity in your nerves. The machines gives an electrical shock, and if all is well, your body responds. For example, they give a shock to the shoulder and your hand lifts up. The results were terrible. Basically I had no nerve activity at all. The doctors were shocked. It meant that the connections between my nerves and small muscles were completely destroyed. They did another similar test about two days later, with the medical professor, with the same results.

The professor concluded that the connections between my nerves and small muscles in hands, arms, legs and feet were completely destroyed… They were cut. The professor believed that this happened because of a sudden throat infection I got when returning from a ski trip. The throat infection happened out of nowhere and was very severe (I almost couldn’t swallow or speak), and also disappeared very quickly the next day. It was caused by a bacteria, which was a normal bacteria that would have caused a regular throat ache in other people.

What happened however is that my immune system did not only attack the bacteria, but also my own cells. It went into overdrive. The doctors are not sure why this happened to me, but they said it can happen and does happen somemetimes. My immune system attacked the connections between my own nerves and small muscles. My immune system reacted to strongly that the connections were completely destroyed. All of this triggered the Erythromelalgia. So the EM was caused by the reaction of my immune system and completely secondary.

Once they found out what happened, they admitted they could have given me different medication, had they known this beforehand.

My hands and feet got very thin and I lost my entire fine motor skills. I could not write, grab things, open or close a button, etc. I started doing excercises and going to the ergotherapist to try and regain the movement. Because I am young, there is a good chance that the nerves will try to reconnect to my muscles. Slowly, my hands and feet improved. Now I can write again, open and close buttons, grab things, and do almost everyting. My hands and feet remain weak though, I don’t have a lot of strength in them, and I still have trouble feeling hot and cold. I still have pain in my feet and cannot stand or walk for a long time without an annoying feeling. But I can’t complain. I am basically pain free now, do not take any medication anymore and feel so glad to not have that terrible pain anymore.

Also I am 8 months pregnant of a boy. I am due the third week of April. My boyfriend and I feel blessed with this little present we ended up with.

I hope this may help some of you. I wish you all the best.

X Brenda

What absolutely wonderful news Brenda - thank you for sharing it. Your story brings hope to all EM sufferers. I pray that you continue to see improvements in your health and that the rest of your pregnancy goes well. Your 'blessing' is truly a blessing. God bless you and your family x

Congratulations Brenda! On both your improved EM and your soon to be Baby Boy. I have a 7 month old myself and I got EM during my pregnancy and it has greatly subsided since I delivered. I got a bad flu at about week 13 of my pregnancy that lasted 3 weeks. I was really sick. As soon as I got better the pain in my hands and feet started. I was in cold water buckets with about 3 weeks.

Since my delivery in August I do not have the constant heat but I do get flares and if I walk to much they hurt with heat and shooting pain. I have had a EMG and my results also showed nerve damage.

My question is what drugs have helped? I had adverse reaction to Gabbapentin, major swelling. I have been on Nortriptyline for about 8 months and I do not think it is helping. I was on major pain killers that I have been able to ease off of.

Thanks for your post, it has me thinking. I have plateaued for the last 3 months and as grateful as I am that the constant unbearable heat is gone, I'd love to have my pre-EM feet again. It sounds like we are in a similar boat.

Best Wishes on your birth!

Did they do any blood testing for autoimmunity? Do you know what tests?

Congratulations Brenda! Both on your Beating EM and your new bundle of joy! I know some people have been asking lately if there is any hope at all for EM sufferers and I told them there was because I know some people do get better. I found your story here and can't wait to share it so others can see that it can and does happen. I wish you the best .

Take care,


Fortunately people with secondary EM have hope, the problem is that at times all tests are negative, in answer to Dave's question re blood tests. My husband's autoimmune test were all negative apart from the skin biopsy which stated vasculitis. Doctors treating him put primary EM as a diagnosis as they did not know what caused his condition.

However, back to the point, he was very bad in March with bleeding open sores on his feet, he could not walk at all and developed an additional neuropathy in his right arm and hand. He was prescribed prednisolone to deal with the last one and he has improved dramatically, the sores and ulcers healed after about a month and the swelling has also improved. He still gets heat attacks, he cannot sit for long with his feet down as they become black/purple or if he walks a little around the house he gets hot/lava feeling in his feet and hands, mostly the right one. So just to answer some queries he still cools his feet in ice but gets no ulcers. I was always of the opinion that the ulcers form from within, I mean there is a problem with micro circulation, not a problem with cooling.

At least he has hope now, we are waiting for ImGl infusion and we might go for immunosupression with Azathropine.

take care and keep those doctors on their toes. Sometimes I have a feeling that it is "a too difficult a condition to bother" sort of thing by many medicos.

I know that many of have problems with Reynaud ’ and pernio that happens from the inside out regardless of the temperature and what cooling methods you use. I too have these and they started before EM.
I would just be careful with ice as dkel9307 has mentioned. Not saying not to use it at all just to limit the exposure and take precautions to not cause injury.
I know I was told by my doctors my cooling caused my pernio and ulcers but it wasn’t me! I hadn’t even used ice it just happens even if it is relatively warm ! So I do understand the frustrations.
Take care,

Brenda, I am so glad that things are working out for you and that your little boy must now be a very BIG part of your lives!! Thank you for sharing such an uplifting story!

Hi Brenda, All the best with your pregnancy and good to hear that your EM has disappeared. I just want to share my EM experience as it seems I have similar symptoms… My first EM experience was when I was 12 and I was struck down with flu like symptoms and was told I had possible chicken pox and go home and have bed rest. Within hours I had agonising pain and burning in my feet which lasted 5 weeks (ongoing hospital treatment and tests but not diagnosed).i lost a heap of weight and most of my muscles/strength,I slowly recovered, the pain went, I regained all my strength and played sports etc like any normal teenager. I have since (over the last 10 years) had 4 major flare ups like the first, where I am completely incapacitated, hospitalised and cannot live without ice/cool water, fan etc. I have now been told that my EM is primary, but i suffer from temporary flare ups. I can go through stages in life where I live a completely normal life, can wear shoes and tolerate heat etc. and then when I am run down, tired, stressed or get sick, my immune system goes into overdrive and I will suffer a flare up (lasting 5-8 weeks) I also have had the electro nerve testing and during a flare I have very limited nerve conductivity, but after the flare has subsided my nerves return to normal… I don’t want to scare you, but you may have my sort of EM. I have to constantly tell myself to take it easy and rest, but it is hard when I feel healthy and normal.

Thank you so very much for sharing and for offering us some hope! How very kind of you to take this time to try and brighten up our day…congratulations on your recovery and God Bless this young man who’s on his way to changing your life for ever!!! You’ll see…BOYS ROCK !!!

I’m so happy to hear a success story! It shows we should not let the doctors stop looking for an underlying cause.

I also want to say thank you to Brenda for posting this. As others have said this DOES give us all enormous hope that our EM which is so misunderstood anyway can leave us perhaps as strangely as it came on!

God Bless you Brenda!


Hi Guys,

Just to add I know 2 people who have had remissions. One lady has been in remission for 6 months after taking sodium channel blockers, and another has partial after the same medications. Myself- was totally disabled and bedridden. I now have better days where I can manage with a frame/sticks. Please do not ever give up believing in hope. One day at a time we are moving towards a better understanding of EM and development of treatments.

God bless


This sounds like ADEM or Guillain Barre Syndrome, Nicole -- one of the demyelinators that can be triggered by an infection or virus. I am very glad you have recovered. This is a good reminder to the rest of us that EM can be a manifestation of many other conditions, some of which resolve over time. Best wishes!

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